GARDENING with CRPS: I’d be lost without it!

 My life before CRPS (Complex Regional Pain Syndrome) was mostly
different to the one I live now, however in the year before, I started a small veggie
garden and loved every part of it. Especially that summer. My favourite memory
of that garden was made of Flat breads with fresh tomatoes, spring onions and
lemon thyme. Put under the grill with some sea salt and olive oil. YUM!! Now I
am really hungry… Anyway I didn’t realise just how crucial that first garden
would be for me. Not only did it introduce me to heirloom tomatoes but it
sparked a passion that would save me in so many ways.

Nectarine and Basil Jam from my first garden. YUM!

Nectarine and Basil Jam from my first garden.

The next summer I was facing a pretty dismal future. I had survived
a massive burn injury, my beloved horse Ernie passed on (It still hurts so much)
and just when I thought I was able to move on I had my first CRPS flare that
made sense of all the strange symptoms I was having. Suddenly this thing was

spreading through my body and I was losing control. Despite it all I just naturally kept gardening.

It hasn’t been easy. I get frustrated when I can’t do things or I
do them anyway and pay the consequences later. But then I know that each time I
go out there, that that night and the next day and maybe even the day after,
will be “off days” for me. But that’s ok because it’s better than nothing and I
would probably be I pain anyway and at least I enjoyed earning it.

Artichoke that I let flower. Amazing color

Artichoke Flowers with the most amazing colour

Emotionally, my garden is my saviour. I am not sure if I
would be here now without it. It gives my head the peace and space it needs
when I am worried or feeling helpless. It gives me hope when I am having a bad
night because in the morning I will be able to hobble around my beds and just
look at what has changed since last time. It’s my distraction from the crap. As
it is on the nights of researching how to make my garlic grow better, as I am
trying to ignore how hard and painful my super cosy bed has become. I have read
articles about how a chemical in the soil can have the same effect on you as a
typical anti-depressant. I really think that they are onto something there.
Perhaps it explains why after a few days in bed I feel depressed like something
is missing. It’s my garden and I need my fix. Over the past 3 years the amount
of gardening that I have been able to do has varied, but I am always thinking,
researching and buying seeds online. What would I do without it?

Physically it is my own kind of Physical Therapy that keeps my body
going. When I had my first flare, my left hand instantly froze and I lost use
of it for a while. It was the slight and gentle movement of picking cherry
tomatoes that slowly got it moving. I know in my heart that my body has benefited
so much from being outside and in my garden. Even just pulling weeds keeps my
arms moving and stops my muscles from wasting. My left arm might not do as much
but the important thing is that it does what it can.

Cherry Tomatoes saved my hand

My Cherry Tomatoes saved my hand in 2013

So far I have refused to get raised beds. Partly because I can’t
afford them and partly because it would feel like a setback for me. It did look
at one stage that I would be in a wheelchair and they were discussed. But for
now I really don’t feel that I need them. I am hypermobile in my hips and the
one thing I can do is bend over and reach the ground. So what was once great for
yoga now allows me to get down to my plants and I am quite comfy like that for a
while. If I need to I can sit on the ground or a stool to get to my plants and
so far I have only had a couple of issues where I have fallen and needed help
getting up. It’s the heavier work where I get frustrated. I can’t do it and I
hate waiting for help. I am learning to be patient and ask for help but I am
naturally independent and I had always been strong and able to do the hard
work. That has been hard for me to swallow

I know that I am so lucky to be able to still do what I can and I
dread the day, if it comes, where I can’t garden any more. I am not sure how I
would cope. For now, I am just enjoying being out there when I can. Being sick
has made me appreciate the small things and all. I know, what a clique. Mostly its
hanging out in the garden with my girls. Gemma (dog), Molly and Moggs (Cats),

Plus all of the cool animals and insects that have moved in since I
turned the orchard organic. Through gardening I have also met other gardeners
and built a little network of people to share knowledge and spare plants with.
I really love that I can provide food for my family and friends. Especially for
my parents at home and my Mum at her Cafe. I supply her all the herbs and greens
that she uses. After all they took me in when I got sick. This is my way of
contributing and it means the world to me.

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Gemma: Top dog in my garden and she knows it!

So that’s me and my gardening with a disability. To end this post I
want to leave a quote that I think sums it all up.

 

“To plant a garden is to believe in tomorrow.”

― Audrey Hepburn

Also posted in my other blog Grow To Heal

SUMMER: Surviving the heat with CRPS

I love summer here in Australia but now that I have CRPS the heat really kicks my ass! Today is a scorcher and I am hiding away indoors with the air-con on. This is my second summer with CRPS. Well it’s actually third, but the first one I was only having minor symptoms, hadn’t had a flare and didn’t know anything was wrong until towards the end of that summer. Last year was my first full summer and it was a hot one. I remember a full week of days above 40deg. My mum actually helped/half carried me into the water at the beach one time as I couldn’t walk or hold myself up. Luckily we can drive and park on the beach here so it wasn’t far to the water. After 20min I was good as gold. Well kind of!
We haven’t hit 40 deg yet this year, but it’s the first day of hot weather we have had and I’m right back there again. I hide away inside all day and hopefully sleep right through it and be up at night when it is cooler and after my body had been soaked in the ocean and cooled. That’s where we will be heading late this afternoon. Straight to the beach.
So I was thinking that maybe I could compile a list of things that we can do to cope with the heat. This is what I have so far.

·         Stay cool: Do whatever it takes. Sit in front of the air conditioner, have a cool bath or shower, Go to the pool or beach to soak your body, put a soaking wet cloth around your neck, make sure any car you’re in had a working air-con. Whatever it takes. Even if it’s having a fan on and a sheet over you to stop the air from upsetting your body.

·         Go to the Beach:If you’re lucky enough to live near to the beach, it is going to be your saviour during a hot summer. I tend to go later in the afternoon when the beach is quieter. The movement of the water gently massages your body while it cools you down to a level where you can cope. The magnesium fix that you get will also help with your pain and other symptoms. Plus It’s fun to go to the beach, move your body around and you get outside and get some Vit D. Always take someone with you tough, so maybe make it a bit social. It’s a great way to spend time with a loved one. It’s also a good place to work on moving any part of your body that isn’t doing so well. It’s like Hydro therapy and really helps if you’re able to cope with being in the water. Even if you just walk along the beach or stand in water an inch deep. Whatever works?

·         Stay Hydrated:This is a must. If your hot your probably sweating and loosing fluids from your body. The extra pain meds you probably need will also be messing with your body and drinking lots of water will help you cleanse your kidneys when they are working harder in the heat. Really the body can’t work without being hydrated. I carry a one litre water bottle around with me and try to fill it a couple of times. Usually in the heat I will have about 2-3 litres. But don’t overdo it. You can do a lot of harm to yourself if you over drink. Some days I feel that I need something else to satisfy my thirst and water isn’t cutting it. I try an electrolyte replacer. Usually I will use a product that is meant to be for when you’re vomiting. Or I will just get a yellow powerade. I always have yellow because I am not allergic to the crap they put into it. There are plenty of recipes for making your own healthy energy drinks. If you’re interested, here is a link to an article with recipes.

·         Move your body:Sitting around staying out of the heat can lead to us CRPS sufferers seizing up. That is not a good thing. Maybe do some physio, Pilates or use some sort of exercise equipment. You don’t have to overdo it, just move. Maybe wait until it cools down and go for a short walk. I like walking on the beach. It’s relaxing and if I walk very shallow water it soothes me feet. Even watering the garden in the early hours or in the evening is moving your body and keeps it happy. I find that if I don’t move, I hurt more.

·         Make sure you have a good supply of all of your meds:You don’t want to be caught out with no meds and have to go out to get them. The heat will punish you.

·         Find something to keep you occupied:I try to sleep a bit, but I can’t sleep all day. Maybe have some DVD’s or TV shows to watch online. Have a craft, art, make a blog, read a book. Whatever keeps you busy.

·         Ice cream: go on, you deserve it!

So that’s all I can think of at the moment. I may add to the list if I think of any others. The main one though it to stay cool. Do you have any suggestions? Let’s make this list grow so we can all benefit.
Stay cool people. xxx

FULL MOONS and PAIN

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Something that I noticed early on in my life with CRPS and Chronic pain was that my pain and other sufferer’s pain would always rise during a full moon. I’ve always found that a Full Moon effected my moods and sleep so why not pain? After all how do you also explain our pain being greater at night than during the day? Isn’t it equally plausible that the moon cycle could effect us in a similar way?  I did a little research and found that I might have been on to something.  I read how people with arthritis often experienced more pain around a full moon and that epileptic’s had more seizures.

I am in an Aussie and Kiwi Facebook group that chats on a daily basis and it was due to us all being sick with pain flares and my noticing it was always a Full Moon that all of us were online complaining of a shocking flare. So for the next few months I didn’t allow myself to know when the next full moon was unless we were all syncing our flares again. After all its only natural for women to sync up. Lol. Sure enough there was a pattern and over time even the non-believers in the group now whinge about Full moons. Especially one person in particular, who bullied me for my theory and is now the first to announce the arrival of a full moon as if it was him all along who brought it to the group. Oh well!

TODAY 14th MAY 2014 IS A FULL MOON HERE IN AUSTRALIA

Basically it’s all to do with Ions in the air that are either positively or negatively charged. During a Full Moon the air is positively charged and this causes a hormonal reaction in our bodies.

“Ions are floating in the air around us all of the time and have either negative or positive charges. Changes in their concentrations or in the ratio of positively to negatively charged molecules can have remarkable effects on plants and animals. It is known in science that ion depletion is the source of a wide range of human health problems, both mental and physical.

These air ions are important to you because if they have a high proportion of negative ions in the clusters you will feel lively, uplifted and enthusiastic. Too many positive ions in the clusters will have you feeling depressed, lethargic and full of aches, pains and complaints.”

Read the full article at www.quantumenergywerks.com

So what do you think?

I hope the Full Moon is kind to you. xx

6 Things about Chronic Pain You Didn’t Know You Knew

6 Things about Chronic Pain You Didn’t Know You Knew.

via 6 Things about Chronic Pain You Didn’t Know You Knew.

Chronic pain isn’t just constant pain, though that would be more than enough for anyone to handle, the truth is chronic pain always brings friends. These added challenges are obvious, but rarely taken into consideration by “healthy” people.  Remembering that like all bullies chronic pain travels with a gang can help to better understand the life of someone in chronic pain.

Pain is exhausting.  We have all had a bad headache, a twisted knee, or a pulled muscle, and by the end of the day it is a monumental effort just to read the mail.  You may not have consciously realized it, but the pain that has relentlessly nagged you through out the day has drained you as bad as any flu.  Even when you try to ignore pain it will stay in the back of your mind, screaming for attention, draining away all of your energy.

I Love My Facebook Groups!

Everybody needs support when they are going through a hard time and the thing with CRPS is that no matter how supportive friends and family are, there is no way they can fully understand the hell that this disease causes.  I really struggled with this in the beginning and felt very isolated and daunted by what I was facing. Then I discovered Facebook Groups for people with CRPS. The Aussie and New Zealander support group was an instant match for me. I’ve joined others that have been great, but This group has become my rock.  We laugh, support each other and most of all we don’t judge. Its ok for me to have a whinge when I am at a low. Its welcomed when I post silly but relevant pictures. Probably the best bit is the people I have met in person and the friendships that i have made. How would I have made it this far without Facebook??? No wonder this used to be called the suicide disease, I often wonder if the suicide statistics have changed for CRPS since the birth of the internet and Facebook.

I hope everyone is doing well. Im currently flaring and my pain meds keep me awake. Im hoping to sleep soon.  xx

Insomnia: Doin it all night long!

One of the worst parts of having CRPS is the insomnia. When I’m in a pain flare is when it’s worst. Last week I didn’t sleep for 3 night’s straight and by the end of the 3rd day I was a mess. Apparently where the cranky nerves run up into the brain, it causes certain areas to get just as angry. One of these is the sleep area of the brain. It’s like my brain knows I’m sooooo tired, but it won’t flick that switch.

I won’t write too much tonight. Oops, its 4.45am so not night after all. But my fingers are just too cranky and not liking me typing. So Ill add a few funny things I found on pinterest to amuse you. They made me smile, but then I understand. I guess in an hour I’ll get up and walk the dog to the café for breakfast….If my feet allow me. Lots of coffee!!!